Topic: Update on me, my son and daughter..(mostly daughter)
lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi everyone,
I had a few minuets on my hands and thought I would pop in to say hi and give you an update on my daughter.... many of you have been keeping her in your prayers and I truly appreciate it...
As most of you know my 7 year old daughter Mikayla, was diagnosed with Type 1 Juvenile Diabetes, 9 months ago and things are still very hectic for us. Life as we knew it, died the day our daughter was diagnosed.
As many of you who have children with lyme know, caring for an ill child can sometimes be a bit overwhelming. My son still battles with joint pain from his lyme, I am off all meds for my lyme and am doing okay and Mikayla is now "cured" of Lyme.
I must say that having lyme myself and having 2 children with lyme, were nothing compared to the daily stresses of caring for my daughter and her diabetes. (and you all know the difficult road we faced with lyme, so this speaks volumes)
We worry every second of every single day , if her blood sugar will drop too low and she will pass out, or go into a comma or die. Or if her blood sugar will go too high and she will develop ketones, and go into a comma or die.
There are 2 types of diabetes and as luck would have it, Mikayla has type 1, which only 5% of people with diabetes have. It can not be treated with diet and exercise, she will need to have insulin for the rest of her life.
Like lyme, we are learning everything we can about this disease and although at this point there is not a cure for the type of diabetes she has, we will continue to do the best we can to keep her blood sugars under control and do everything in our power to help find a cure.
Mikayla has hypoglycemia unawareness, where she is unable to feel the symptoms of a low blood sugar coming on. She continues to have episodes where she is unaware of her blood sugar going low and she will simply get so weak ,that she falls down. This is very..very scary!
At school 2 weeks ago, she crashed and her bs was so low that she was pale, shaking, cold to touch and was just staring out into space..I was never so scared in my life. She looked like a rag doll. It took the nurses and myself 90 mins to get her blood sugar back up to 70.
The good news is that she is such a trouper about all of this. She has only once said "why me?". She is doing everything she can to help raise money for diabetes research and has been chosen as one of our state's diabetes youth ambassadors.
She meets with politicians, and corporations about the need for increased funding for research. She met with Senator Sununu on Tuesday and asked him to promise to remember her when he voted for funding. He seemed very moved by her and the other 2 children speaking and I hope he listened to them.
She was also asked to be the guest speaker at the big JDRF ( juvenile diabetes research foundation's) Gala this April, where she will do a 3 minuet speech in front of 280 people ( who paid 10,000.00 a table to attend the Gala and auction)....
about how her life has changed these past 9 months, how she has to check her blood sugar 10 - 12 times a day, how she needs 4 - 5 insulin shots every day, and her goals to help find a cure for juvenile diabetes.
She is very excited about all of this and her face just glows when she speaks from her heart, to anyone who will listen about how we need to find a cure for this illness so other kids like her can be cured and just be kids..
she is a natural and holds everyone's attention with her positive attitude. ( Plus my hubby said her pretty smile and red hair have a little to do with it..he may be right )
We are hoping to get her on an insulin pump in the future, but her blood sugar is all over the place and we need to wait for it to be in better control until we can even think about it.
We are going to a Diabetes Family Camp this summer where our whole family will go to camp and meet with other families who are learning to cope with our new way of life.
So while life as we knew it did in fact die the day our daughter was diagnosed with juvenile diabetes..we now have a new way of life.
While I wish I could go back to the days when my daughter was able to experience the innocence of childhood - without diabetes, without blood sugar test, insulin shots, ketones checks..etc..I am so thankful and blessed that she has an illness that with careful monitoring and care, she will hopefully be able to live a long, happy, "normal" life.
Many parents aren't as lucky..so I will take what life threw at us and do the best I can with it..And I will continue to draw strength from my 7 year old daughter who has faced this illness like a trouper.
God Bless,
~Missy
Posts: 3154 | From NH , USA | Registered: Oct 2002
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bettyg
Unregistered
posted
Missy, thanks for typing an update on you all!
Mary Tyler Moore has had diab. 1 since around Mikayla's age too; she's Natl. spokesperson for juvenile diabetes.
WOW, you're going to have a celebrity in the family with M speaking to the diabetes gala! So happy she will be able to touch people's hearts and their pocketbooks to find a cure for both types of diabetes!
She talked to your senator; she's going to be a lifelong advocate on diabetes & lyme until the day she dies as an adult. Good for you/hubby to have her getting involved in expressing herself to the public.
Have you ever gone online to find out any more info on diab. 1?
Glad you will be looking into a pump for her. I don't know of anyone that young in our local diabetes support group; age 12-14 perhaps.
If I get down to 80, I think my BS is really low. Normally I feel so sick to my stomach, and sometimes the numbers are so high then; goes to show how sick we are.
Best wishes to you all. Hope soon that M's diabetes settles down where it's under complete control.
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You must be so proud of your daughter. Aren't children so incredible!
What a great story to hear about her raising money and contributing to the cause of diabetes.
My daughter was just diagnosed with lyme and I wonder what changes it will bring to her path of life now that she has this to deal with.
Your daughter sounds very courageous and I wish you all the energy and resources you need to help her and your family through this.
Posts: 460 | From Illinois | Registered: Aug 2005
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Hey,
Is she tying Lyme in with the conversations with these people?
What an opportunity.
You must be proud.....my youngest...who is also still battling Lyme was recently voted as THE best citizen of her class by her peers....almost unanimously.
Luckily we two of the most balanced kids you'l ever meet.
Just like your wondeful family...how proud you must be.
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
what doesn't kill us, makes us stronger.....
what an amazing girl she is.
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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Glad to hear that things are taking a positive course for the most part. Your daughter sounds like she is the kind who will embrace diabetes and not let it stop her from having a full life.
I can understand the parental fears over something you have so little control.
Yesterday there was an article in the paper about the new nasal insulin and they talked to an 86 year ol woman who has had diabetes since age 5 so we know you can live loooong.
The woman said at age 5 she had to have 3 shots per day and her mother was so terrified of giving the injections that her family physician would walk the short distance to her house 3 X day and inject her.
Can you imagine a doc doing that today. Anyway at age 7 the woman learned to inject herself and must have done a good job to reach age 86.
I thought of you immediately when reading this inspiring story so just passing it along.
Posts: 561 | From connecticut | Registered: May 2004
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